Monday, June 29, 2009

Back here at CH. Xavian looks better. Matt told me he got him to take 8mL of formula today (30mL = 1 ounce). That's such an improvement.

He is still getting nutrition from the TPN. It is still important to try and keep him eating on his own though. There was no CT today and there won't be one tomorrow. Neurosurgery had decided the shunt needs to be put in regardless. So, there really is no need to do another CT. We are still monitoring his heart rate, eyes and fontanelle. We are all hoping and praying that his counts are up so that can be done the end of this week. I haven't seen a print out of his counts just yet but I think the ANC is 500. Two days ago it was zero.

Right now I want to thank Mel and Rita (two co-workers of Matt). They have volunteered to bring Matt and I dinners when we stay here with Xavian. Also, thanks to all the church groups that made us dinner when we are at home. They all have been a wonderful blessing. It is such a stress reliever when you don't have to worry about what you are going to eat. "Living" at the hospital can also get expensive if you are having to eat every meal in the cafe. So, thanks Mel and Rita and all the others we have not had the chance to meet for meeting one of our needs during this time.

Please pray for...1. complete healing for Xavian2. numbers to continue to increase rapidly3. comfort for Xavian4. less and less fluid build up5. a CURE for childhood cancer6. other families fighting this disease

Thursday, June 25, 2009

What a journey this has been. Yesterday Xavian had a CT done because he continued to be fussy and the vomiting was not easing up. The CT showed his left ventricle was larger than the MRI that was done 3 weeks ago. It is larger because something is obstructing the CSF from draining properly. The way to solve this problem is by putting a shunt in Xavian's head to drain the CSF (to his belly). The problem is they can't do the surgery because his white count is pretty much zero (0.08). There is a risk of infection when his counts are this low if they were to introduce something foreign into his body. To send us home his counts can be 200. To do the surgery they have to be to a normal level (between 4,300 and 10,800). Because Xavian has had 3.5 rounds of chemo his bone marrow is pretty much shot. They tell me it could take longer for counts to get where they need to be. Time is not on our side here...

We will continue to monitor Xavian by measuring his head circumference every day. The beginning of next week another head CT will be done to see if there is any more change. If he worsens they will have to stick a needle in through the sutures (joints between the plates in the skull) to pull some of the fluid out. Instead of sticking the needle through the ventricle to drain the fluid they will stick it in the cavity that was created by the tumor to drain fluid from the cyst. This will prevent any damage to the healthy brain tissue.

Right now, Xavian will be on scheduled morphine to keep him comfortable. He will continue to get the maximum dose of Leukine to help boost his white count. Other than those we will play the waiting game, again.

Please pray that Xavian will find comfort with the meds and rest peacefully. Pray that his counts increase quickly. Pray for peace and comfort for Matt, Dante and myself. Pray that I or Matt will know what to ask our surgeons/doctors so we can fully understand what needs to be done.

Wednesday, June 24, 2009

Yesterday afternoon the nurses pulled Xavian's feeding tube, per doctors orders. The doctors had the pleasure to see him throw up all the mucus junk he'd been doing for several days. They think the tube was making him gag and extremely uncomfortable. Because he is still not eating anything PO (by mouth) they will start him on TPN (iv nutrition) this afternoon. So far, this morning Xavian has gotten platelets. This is expected. He is also not feeling very well. Very fussy! He'll doze off then wake up and can't get back to sleep. This makes him very agitated. I think he has some teeth trying to come in. That, combined with low counts make for a very unhappy 7 month old. Oh, that reminds me...Xavian is 7 months today. It's hard to believe we have spent 5 months, now, in and out of the hospital. Seems like it's been mostly IN.

We still don't know when another MRI will be ordered. This will determine when and if another round of chemo will be done.

Thanks to all that have kept our family in prayers these past 5 months. Thanks to those that have helped either with finances, food, or watching Dante when we can't be there. You all have made this difficult time that much easier. If that makes sense.

Xavian has finally settled down. So, I think I am going to take a nap too.

Tuesday, June 23, 2009

Yesterday was pretty uneventful. Xavian had the feeding tube put back in. Matt had to be with him then because I was still on my way here with Dante. He then slept pretty much all day. He hasn't had morphine since 10 am, yesterday. Still won't eat. Still throwing up. They actually decided to turn his feeds off during the night. Once they turned them off he stopped vomiting. It is still hard to sleep though because every time he starts coughing he then gags. I then jump out of bed to make sure he's not throwing up. I think he is having to get used to the TP tube all over again. This one is actually bigger than the one he had last time. They weighed him last night too and it seems that he has lost a little weight. Considering this is the third round of chemo and he hasn't lost any weight up until now, we're lucky. I am just afraid that he will forget how to actually eat from a bottle. He is sucking on his paci like crazy though. Maybe that will help. He will be seven months tomorrow and hasn't even started baby cereal yet! Arggg! STUPID cancer! STUPID chemo drugs! It seems that when he gets better and his counts come up he gains a few mile stones only to get sick again and slide back. It's all very frustrating...

I spoke to one of the doctors this morning and they are probably going to just turn his feed on really low and leave it there all day, instead of turning it up by 5mL every four hours. Hopefully this will keep the vomiting at bay. I had a lot of breast milk stored up from the times I had to pump in the past. I'm using that for the feeds in hopes that will get his counts up quicker. Who knows...breast is best, right?

Please pray that Xavian will begin either eating from a bottle or at least tolerating his feeds. He really needs the nutrition. Pray his body will start making bone marrow again, his numbers need to come up so we can go home. Pray for Matt as he is going back and forth from work, the hospital and home with Dante. Pray for Dante. I think all this is starting to wear on him too. He is always asking for "baby brother". Oh yea, Xavian is getting blood today and probably platelets tomorrow. So, thanks to all those that donate. Those that don't and could, you should. Take a look at this link below and do what you can to help us and all our "c" friends.

"When I despair, I remember that all through this the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of it--always." –Author Unknown

Swine Flu 2009: 15 confirmed U.S. deaths as of June 1, 2009 at 2:41 PM

Childhood Cancer 2008: OVER 3,000 children dead in the U.S.

Swine Flu Government Funding: OVER $1.5 BILLION

Childhood Cancer Act Government Funding: $150 MILLION in funding spread over 5 years

Stand Up 2 Cancer Awards $73.6 million to 5 Dream Teams

Thank you to Brenda Everson-Wiesman (TEAM DREW W) for the article below!

The five Dream Teams are: Epigenetic Therapy, Women's Cancers, Breast Cancer,Tumor Cells Chip, and Pancreatic Cancer. No mention of childhood cancer as of yet except possible pediatric innovative research grants to be awarded later. Things we can do:

2. On the same site, go to the "Magazine" and then the SU2C blog and leave a comment for Lisa Paulsen who wrote "Outpouring of Support Gives Hope Against Cancer." Lisa is the President and CEO of the Entertainment Industry Foundation (EIF). Ask for children's cancers to get their own show like I did if SU2C is not going to give pediatric cancers much funding.

3.Go to the American Association of Cancer Research site at www.aacr.org and use the "contact us" button to email this group who is the scientific arm of SU2C. Ask why pediatric cancer was not included in one of the Dream Teams.

4. Go to http://www.cbsnews.com and email Katie Couric under Couric and Co. about the need for special reporting about how childhood cancer is only receiving 3% of the research funding. Katie is also on the executive board of SU2C.

5. On the Katie Couric site you can add a comment to her story "Disparity in Cancer Research Funding." Pediatric cancer was not listed but breast cancer was listed as one of the ones getting the most research money. Of course we all want to see an end to breast cancers and all cancers but... we want more money for the childhood cancers which are under funded.

6. If anyone has any contacts to the SU2C show, you could ask them why pediatric cancer was not included when the stories and photos of the kids were used. Also the team Crushing Kids Cancer raised $47,000 for the show and was the top team.

7. Any other suggestions welcome. I know some of this is a re posting of earlier items this week but I feel that it deserves it's own discussion as the earlier info was not clear, my fault.

8. SU2C just announced a new bunch of celebrities to help the cause. Sounds like a new show might be in the works. Maybe in Sept. again? How can we get them more involved with our cause? Can we get them to join PAC2 (ED: or Team Unite)? Can they say that Sept. is childhood cancer awareness month on the show? Will they be contacting parents of kids fighting cancer and if so, what should be our response? Ideas?

NOW IS YOUR CHANCE TO DO SOMETHING!!!

September is Childhood Cancer Awareness Month and September 13th is Childhood Cancer Awareness DAY!!! HELP US IN OUR UNIFIED EFFORT TO CONQUER CHILDHOOD CANCER. in the words of our own, TEAM ALEXA - “CANCER, YOU'RE FIRED!!!”

Anyone can help promote childhood cancer awareness and research. Do you have success stories of how you’ve made a difference? Please share your ideas on how to get the word out that September is Childhood Cancer Awareness Month and that the 13th is Childhood Cancer Awareness Day. Join us in our unified effort. Together we can raise awareness for September and of course; AWARENESS = FUNDING for RESEARCH = A CURE!!!!

Easy GOLD RIBBON CAMPAIGN!!!

Start by wearing a gold ribbon or awareness gear yourself! Anyone with ribbon, scissors and glue can make them or you can order them on line. Better yet, organize a group of volunteers to make gold ribbons that can then be handed out at events with a flier attached stating the reason to wear the gold ribbon (symbol for childhood cancer).

If you need a source for September gear, please visit www.cafepress.com/teamunite today to order your childhood cancer awareness items! Please note that Team Unite is not a fund raising group. We give 100% of the proceeds from the sale of the September gear to support childhood cancer awareness campaigns.

Please share information and news. Did you hear a story on the news or read something on line or in print? Please share that information at http://teamunite.net/forum/. We need to know who out there is helping promote childhood cancer research by airing or writing stories having to do with our fight! As a unified group we must each reach out and thank these people and encourage more coverage!

Saturday, June 20, 2009

Xavian hasn't done very well this weekend. I seems that he is in more pain. Of course it's hard to tell because he is only 6 months. Every time someone goes to touch him or pick him up he gets real tense and fusses. The doctors decided to change him to scheduled morphine every three hours. This seems to be helping. He does sleep more but when he's awake he seems to be more comfortable. The do have him on the sat machine to monitor his O2. His levels have been fine though (99-100).

I spent Friday night and this afternoon at home with Matt and Dante. So, when I got back the nurses let me know the doctors wanted to go ahead and put the TP tube back down since he hadn't eaten enough. But, I told them I was worried that his platelets were low. They checked to see what they actually were. I was surprised they hadn't already given him platelets when they came back and said they went from being 20 on Friday to 8. The hospital was waiting to get a shipment of platelets and blood from Red Cross. Once that gets here hopefully he can get some and then they will put his TP tube back down so they can start feeds again.

It's pretty much just a waiting game at this point. His bone marrow has taken quite a beating after the 3.5 rounds of chemo so it will take a little longer for his counts to come back up.

Monday, June 15, 2009

We are back. At the Chilton (Children's Hospital) that is. Room 439 this time. We were discharged Friday morning and had a good time at home until Xavian started vomiting and not eating. Saturday night Matt and I were giving Xavian his meds and starting his nightly feeds when he threw all his meds up. His feeding tube started coming up too. We decided we couldn't wait until our clinic visit on Monday to get him checked out. Matt said he would take Xavian to the ER while I stayed with Dante because he was already asleep. We called the on call nurse to let her know (we had already talked to her earlier that day). She said she would call the ER to let them know we were on our way. Well, when Matt got there she had not called yet. In fact, as far as we know, she never called. She had a good 30 minutes to call. ARRRGGG! That really made me mad. I still have to talk to our nurse about that. Matt said that the doctors in the ER said that his glucose was low and we did the right thing bringing him in because at the rate he was vomiting he would have been dehydrated by Monday. They also said that he looked good for having gone through 3.5 rounds of chemo. Once they started the bolus (fluid) he had a surge of energy. They also decreased his feeds to 5mL/hour throughout the whole day.

I got to the hospital Sunday afternoon to trade out with Matt and could tell Xavian was feeling much better. He was moving all around and talking. He even spent a lot of time with the nurses at the nurses station. They wore him out because he took a good nap.

This morning the doctors decided to increase his feeds to 10mL/hr. They will continue to increase the feeds and decrease his iv fluids as long as he tolerates the feed. He is also getting blood as I type because his hematocrit was low. They also had to add potassium to his iv fluids because that was low as well. His platelets are low but he is not getting some today. Maybe tomorrow. He has not had fever so that's good. But, the doctors seem to think that he will because his white count is sooooo low. So, looks like we will be here for awhile. I am praying that it won't take as long for his white count to come back up so we can go back home.

All this back and forth from home to hospital is so taxing on my sanity, sleep, health and every other aspect of life in general. I really need a whole week to catch up on sleep but will take a day (if I could get it). We still don't know what the future holds for Xavian when it comes to more treatments or not. As soon as we know something we will update. I tend to update the CaringBridge site more because it's easier to get on and just post a little update. You can follow it here...

Wednesday, June 10, 2009

Last night was pretty rough...this round of chem seems to be kicking Xavian's butt and making him sick. He has been on feeds at night for 10 hours. Last night they turned them down from 38mL/hr to 20mL/hr. After he continued to get sick they finally shut the feed off.

Even before all that Xavian had a crying fest for about an hour. Tylenol, Benadryl, Orajel, Zofran...nothing seemed to help. So, I just cried right along with him. I am sorry for our neighbors if he kept you up. On top of that I had a migraine. My aunt came to the rescue and stayed here with me. She got here just in time for me to run to the bathroom and get sick. Thanks Aunt Nawnie...

We have started today's chemo drugs. The Dr. wanted to start earlier today in case of any reactions he may have. Tomorrow he will be getting Cisplatin (the one that caused some of his hearing loss). They've decided to cut the does by half. The Dr explained that it is still a pretty heavy dose and his numbers will still come down. Once we finish on Thursday he will get fluids the rest of the day and through out the night. Friday morning I am hoping we will be able to go home (for the weekend at least). I expect we will be back here next week for low counts or fever or some other side effect.

I continue to pray that this is the last round Xavian will ever have to do. Also, that once we start his feeds back up that he won't throw up as much. I pray that he will start to eat more on his own during the day as well as no mouth sores. I ask that you pray with us in these things as well. Thanks so much!

An update on Dante...He had his two year check up yesterday and is doing great beside the little stomach virus he has. He isn't running fever or acts as if he feels bad either. He will just throw up and then go about his business. He weighed 24 pounds (10th percentile) and was 36 1/4 inches (90th percentile). The Dr seems to think he will be around 6 foot 2. How they figure that, I don't know. He is still our loving, hugging, kissing little man though. I will try and post some pictures later tonight from our trip to ATL.

Please continue to pray for all the families that have lost their children to cancer. Pray for those that are going through treatment as well. Go donate blood/plasma.

We just got back to our room from having Xavian's hearing checked. He didn't do so well. The results show that there is some change in his hearing from the last test. I am telling myself that it's because they woke him up during his nap, he thought he was hungry and he had an explosive diaper. I am going to ask that they recheck him later today or tomorrow. I am also wondering if the Methotrexate is making him irritable.

Tomorrow is big brother Dante's second birthday. Grammy (Matt's mom) will be here tomorrow afternoon to stay with Xavian while Matt and I take Dante to Atlanta for the weekend. We are going to stay with Matt's sister, husband and their two boys. Saturday we will take Dante to the aquarium. I think we are all looking forward to that. I'm also looking forward to seeing Dante tonight. He's been in Montevallo with my aunt and cousin since Monday. He has been going to their church's VBS all week. I hear he loves the music, showing off his dance moves I'm sure.

I met a mother here whose 5 month old little boy was just diagnosed with AML. I remember the day we found out Xavian had cancer and know exactly what she is going through right now. Please pray for Colby and his family.

Wednesday, June 3, 2009

We are finally settled into our room here at Children's in Birmingham. Xavian is napping (he needed one in the worst kind of way). He is now getting his fluids. Tomorrow they will check his urine and begin the MTX. We will also be seeing the surgeon while we are here. Most likely tomorrow. Dr Reddy said that Xavian's soft spot seems to be a little full so they will keep an eye on that. Also, PT/OT will come by and evaluate Xavian. I let them know that I was concerned that he isn't reaching for objects. He is also not sitting on his own. He will sit for a few seconds but then fall to the side. Hopefully they can work with him and get caught up and it's not a balance issue because of the fluid on his brain.

Specific prayer request:

1. Xavian will be able to clear the MTX so we can finish this round

2. The surgeon clears him to finish this round

3. NO mouth sores

4. NO allergic reaction to any of the chemo drugs

5. Safe travels and Matt and I take Dante to Atlanta for his birthday

6. Xavian won't have a break down while his Grammy stays with him this weekend

Monday, June 1, 2009

I just got off the phone with our oncologist nurse practitioner and we will begin the 3rd (and prayerfully final) round of chemo this Thursday. We will go to clinic Wednesday to be admitted and be on fluids all day. While we are there Xavian will hopefully be seen by the neurosurgeon. This will be a lot easier on me too. I originally couldn't get us in until June 11th. Dr Reddy said it's more important that he go ahead and get this 3rd round started since it's not pertinent that he have the surgery right away.

We had planned on taking Dante to the Atlanta aquarium this weekend for his 2nd birthday. I should know by now that God has other plans. Matt's mom has volunteered to come stay at the hospital for a day or two so that we can still take him.

I'm not really looking forward to the nights on a pull out bed/chair at the hospital but I will do what needs to be done so that Xavian can be well again. There are families at Children's that have been there longer than I even want to think about. Please continue to keep us all in your prayers as we are all in this fight together.

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Thanks for visiting our blog. Our life is probably not too interesting to those outside of Our Four Halls, but you've come here and at least looked down our Hallway and we appreciate it. If there is anything we can do for anyone, please let us know. The love of God is such a special thing. We want to glorify Him in any way we can!!